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Wednesday, December 14, 2011

Acronyms Galore

Here are PART ONE and PART TWO. Oh, and just so y'all know - so you don't grow concerned - Squirt has been home since last Thursday, and has been seizure-free so far. We saw a pediatric neurologist on Monday morning, and I'll write about that visit as soon as I have time.

Squirt dealt well with all of the testing, mostly because the Ativan completely knocked her on her little diapered tushie. She didn't even have a clue about the CAT scan. They allowed me to sit next to her during the scan while the husband waited just outside in the hallway. A CAT scan is pretty basic, since you just lay still and let the machine do all of the work. Now... if Squirt had been awake during the test... oh my lands. Because the phrase "just lay still" doesn't seem like a big deal unless you're talking about a toddler.

And Squirt is very much a toddler now, despite the fact that she's not walking yet.

The EEG felt a touch more difficult.  Squirt slept through most of the test, but the technician did have to wake her up for the last portion.  She looked so drugged and just plain pitiful.

So many people prayed for us during this time, when we didn't have the words to do it ourselves.  I can't even tell y'all how much that meant to us.  The husband snapped a couple of photos with his phone, which I'm glad about now, but at the time all I could think of was, 'I am in pajamas.  I have no bra on.  I haven't brushed my teeth in over 18 hours.  I smell.  And you're taking photos?'

(Tonggu Momma, thou art vain.)

And let's not even talk about Squirt with her scary hair.  The day of Squirt's discharge, as we walked the halls of the pediatric unit, keeping Squirt entertained, I laughingly told Squirt that she was rocking her hair, and that I couldn't wait to give her a bath so that she could feel clean and look normal again.  Because there's nothing like electrode paste as a hair accessory, let me tell y'all.  Embarrassingly enough, a half a dozen nurses overheard my remarks, although thankfully all of them burst out laughing (rather than judging me for my lack of maternal love).  One of the nurses told me, "well, at least you know she looks a mess.  Most parents have no idea their children walk around these halls looking awful."

Seriously, y'all?  Seriously?

Here is my PSA for the year - no matter how much you love your child, electrode paste is NOT a good look.  That's all I'm saying.

They ran glucose tests on Squirt throughout the day and night, at first every hour on the hour.  Her poor little toes looked like pincushions before dinnertime.  Her levels fluctuated greatly.  Normal range is from 80 to 120.  Squirt never quite managed to get there.  She started at 48, rose to 79 after a bottle of Pedialyte, then quickly skyrocketed to 400 when they gave her just 5 mL of dextrose.  They took her off of the dextrose, expecting her to gradually lower to normal range over the next four hours, but she quickly plummeted to 75 within two hours.

She likes to be different, I think.

Thank goodness she's cute, y'all.

When the doctor returned to share the normal results of the CAT scan, I just about cried with relief.  Because that, more than anything, scared me to no end.  It could have shown a brain tumor or lesion... or brain damage from a previous injury or illness... or the aftereffects of a traumatic birth... so many things.  Things we had no way of knowing about because, for all intents and purposes, her medical history began when we met her on June 13th at 11 months of age.  But her little brain is perfect.  Absolutely perfect.  And her developmental delays are the result of her previous environment - nothing else.

It was an answer to prayer.

Then the doctor told us that Squirt would not need a spinal tap.

Another answered prayer.

Most of our time in the hospital feels like a blur.  I remember more about the 9-1-1 phone call and ambulance ride than anything else, mostly because that hour and fifteen minutes plays out in slow motion in my head.  But our time in the hospital?  It's pretty much all a blur except for snatches of moments here and there, like when the doctor told us Squirt would not need a spinal tap.

My mom and sister came, lending moral support and taking over the care of the Tongginator for a few days.  Our pastor and his wife came to lay hands on Squirt and pray over all of us.  I remember taking a quick shower in the hospital room at around 2 just so that I could feel clean.  I remember the Tongginator coming to visit her sister for a few minutes before leaving with Tonggu Grammy.

I remember giving the husband "chores" to do right before some of the medical stuff happened.  I didn't even notice it at the time, but when the nurses first placed a peripheral IV line in Squirt's arm, the Husband just about lost it.  Squirt doesn't have good veins.  She's also 17 months old and strong.  It took three nurses to do the deed, and it wasn't easy to watch.  Blood ended up splattered all across her pajamas.  The Husband told me a doctor actually put a hand on his shoulder to stop him from surging forward towards Squirt... I guess it looked like he was going to body check one of the nurses.

Just for the record, he wouldn't do that.

I don't think, anyways.

But the Husband really, really struggled with watching some of the stuff they had to do.  So I invented things.  For example, when they needed to get a new blood sample from Squirt, I made sure the husband didn't know it was time, and I sent him to get me some food.  When the nurse saw him leave, she rushed in to do the deed before he came back.  He didn't get angry with me when he figured out what had happened; in fact, I think he felt relieved.

Those snatches of time remain clear in my mind, but most of it feels like a total blur.

And I found myself obsessing about the most inane things, like the fact that I wasn't wearing a bra.  And that Squirt's pajamas were all blood splattered.  They're hand-me-down Christmas pajamas.  The Tongginator wore them on Christmas Day when she was a toddler, as did both of my nieces.  And now they were blood splattered.  I couldn't stop dwelling on that.

Small things.  Superficial things.

I guess that... and my faith... and my humor... got me through the next 24 hours.

to be continued...


Cedar said...

I waited up hoping for a post...She is adorable...even with Squirt across her face and electrode thingees in her hair.

My 3 year old got 3 staples in her head Thursday--split it from jumping into a chair--and we cannot wash her hair until they take them out Friday, so I hear you on the hair laments. (We can wash the ends, but not her scalp...)

Kerrie (and Jason) said...

more hugs... <3

3cmum said...

Prayers and hugs from over the pond!

Sharie said...

Glad you're home and seizure free! Still praying...

Stefanie said...

Praising Him for those magnificent ANSWERED PRAYERS!!

Debby said...

Never likes the EEGs. Did they usew fingernail poilish to remove some of the paste. I hated that as well. So glad thaqt her CAT scan was normal. She is so adorable.

lmgnyc said...

It's a good sign that you noticed the electrode paste and were bothered by it. If she was really, really, really in a bad way? You wouldn't have cared. You wouldn't have even seen it. Trust me.

Hoping things have been figured out, hoping all is well for Christmas. Hugs TM.

Dawn said...

I'm a lurker but I just wanted to say how much your story has an impact on me. It's a family's awful nightmare. My prayers include your family.

Asher's gma said...

I'm a lurker also, been reading your blog for a while, usually at work (shhh don't tell), one reason why i never really comment, but anyhow, when I read your first post I was immediately sent back to October 5th, 2008. The day my grandson was diagnosed with a brain tumor and we later found out that it was malignant. We never noticed him having a seizure either, but appearently he did have one at one time, I later saw him have one in the hospital and like you I don't think I would have known it was one if the nurses wouldn't have rushed me in the room at 2 am saying he's seizing. Your story brought back memories of a nightmare but I didn't want to comment and make you worry even more. Just like you I remember that day vividly, I will never forget hearing the words brain tumor and the emotions i felt that moment. I prayed for a clear CAT scan for your little girl. I know how nervewrecking they are, my grandson has to do MRIs every 4 months and even though they've been clear, we worry til we get the results. I hope they figure out what is causing your daughters seizures, my only advise..follow your gut. If you don't think they've done or tested enough, push for answers. I'll keep you all in my prayers.

The Byrd's Nest said...

She is even overflowing with over the top cuteness with all of those silly wires on her head:)I can't even imagine going through what you have gone through this past week and I for one would be totally obsessing on not having a bra or my toothbrush:) Just saying:)

I'm so thankful there have been no more seizures and know that we love you guys!

Catherine said...

So, so thankful that Squirt is doing ok and is seizure free!! I cannot imagine how awful this time was for you! Praying now that all will continue to go well with Squirt and the whole Tonggu family.

I totally get the 'not important being important' thing when under stress. I was staying with a friend's husband a few weeks after he'd had a double bypass and valve replacement. When he mentioned his heart seemed to be racing and I measured it at 180+ I called 911! While we waited he casually asked me to grab his shaving kit which I did and I guess slipped it onto my arm. 3 hours later I was doing something and realized that even after being with him when the paramedics worked on him at home, in the ambulance, at the hospital, driving to tell his wife when she got off stage from playing at a concert, back to the hospital and more waiting...I realized that silly shaving kit was still hanging from my arm. :o)

Yes, in stressful situations we worry about the silliest things like bras, blood on pj's and more.

Susan said...

I lurk as well. I am exactly one year out of being in the hospital myself...for a brain lesion. Then another one. Two surgeries later, and several million (at least it feels like it)MRI's later, I finally have a diagnosis. But the days leading up to surgery? When there was nothing I could pinpoint for why I had lost all coordination? Scariest ever. And I am 34. It was far less scary with my family. Far less.

I worried about my underwear. I know. Staples in my head, partially shaved head. Left over hair in pig tails tied up in gauze. But I was in a hospital gown. Smelled awful. And I was worried if my undies were cute enough. Silly thing to worry about. But with so little to control, that was something I do remember trying to control.

I can't imagine what this must feel like. But Squirt, as scared as she is (and lord knows she is petrified, even if she can't articulate that), having her family and loved ones around makes all the difference. Poor baby. I have some good vibes, and spirit apparently in my corner (otherwise, I would not be as lucky as I am). I will send it your way.

Kelley said...

I've been a lurker for a while now...since our new little one came home (August 2010), life has been busy and I don't get time to comment much. But I'm still here and still reading, and thinking about you all and praying for you too. I hate that you've had to go through all of this...I can't imagine how scared you were. What an experience! Here's hoping that all is OK now, and that writing about it helps to relieve some of the stress of it all.

Aunt LoLo said...

Oh, bless your hearts. (And yes, I would have dwelt on the PJ thing, too. It's just a mama thing, I think. It's the little things that SHOUDN'T happen, that do. Nothing should ever happen to a toddler that would spatter their clothes with blood...but sometimes, it does. Does that make sense?)